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Gender Identity in Interoperability StandardsPublication date: Aug 25, 2025
The helpdesk of the HL7 Netherlands affiliate received multiple questions during the past 6 months related to the concept of
'birth sex', in the context of the ordering of diagnostic tests. How do we capture/send this data item ?
In the context of a diagnostic test it may be relevant to be aware of the 'sex parameter for clinical use', e.g. a PSA test only makes sense if the patient has a prostate and an imaging procedure may have to be done differently if the patient has ovaries. This is a use case that we haven't covered in our Dutch national implementation guide for FHIR and HL7v2, although we have guidance in place for HL7v2 to use a OBX segment (the equivalent of an Observation in FHIR) to capture the (self identified) gender of the patient. A few years back HL7 hosted the Gender Harmony Project to ensure that the use cases were well defined, and to ensure harmonization across multiple interoperability standards (e.g. HL7v2, FHIR, DICOM). The project also provided implementation guidance for these standards (e.g. for FHIR R5+, HL7 v2.9.1+, DICOM with supplement 233). As such, the answer to questions by Dutch implementers should be based on the outcomes of this project. Traditionally interoperability standards have support for administrative sex and the (administrative) patient name.
Although there is well defined process for changing the administrative gender and name of a Dutch citizen, the administrative name and gender may (still) not match the name and gender that a patient wishes to use. Fortunately most interoperability standards allow for repeating names:
GSP|1|S||76691-5^Gender identity^LN|446151000124109^Identifies as male gender^SCT|20210101 Finally, let's go back to the question asked: birth sex. Given the context of their question (diagnostics) they are asking for what the Gender Harmony Project calls the 'sex parameter for clinical use'.
GSC|1|S||male-typical^Apply male-typical setting or reference range^SexParameterForClinicalUseCS
{
"url" : "http://hl7.org/fhir/StructureDefinition/patient-sexParameterForClinicalUse",
"extension" : [{
"url" : "value",
"valueCodeableConcept" : {
"coding" : [{
"system" : "http://terminology.hl7.org/CodeSystem/sex-parameter-for-clinical-use",
"code" : "male-typical", "display" : "Apply specified setting or reference range"
}]
}
},
{
"url" : "period",
"valuePeriod" : { "start" : "2002-07-13" }
},
{
"url" : "comment", "valueString" : "Patient transitioned from male to female in 2001."
}
}
That seems relatively simple - but there's a twist: the Sex Parameter for Clinical Use can be context-specific. For example, a person who has undergone a male to female transition is 'female-typical' in the context of breast cancer screening, and 'male-typical' when it comes to prostate specific antigen testing (PSA). On such occasions there may be more than one concurrent Sex Parameter for Clinical Use for a patient. A sending HL7 v2 application, if it is aware of multiple Sex Parameter for Clinical Use values shall only include the value that is applicable in the context of the message being sent. Field GSC-6 can be used to define the context - it allows one to link the Sex Parameter for Clinical Use to the clinical context where this parameter should be used. The context reference (based on the ERL data type) identifies a segment-field-subfield within the same message as the GSC segment, e.g. the OBR field that orders a PSA antigen test to be done. Note that a single Sex Parameter for Clinical Use value may apply to multiple contexts within a single message (i.e. GSC-6 is allowed to repeat and point to multiple locations within the message)
GSC|1|S||female-typical^Apply female-typical setting or reference range^SPCU||OBR^4|| We'll have to modify our Dutch HL7 v2 guidance: OBX should no longer be used, pre-adopting GSC and GSP would seem to be a better solution going forward. It's nice to see that this project has resulted in cross-standard harmonization and proper support for gender identity related data. -Rene PermaLink to this page: https://www.ringholm.com/column/gender_identity_in_interoperability_standards.htm
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About Ringholm bvRingholm bv is a group of European experts in the field of messaging standards and systems integration in healthcare IT. We provide the industry's most advanced training courses and consulting on healthcare information exchange standards.See https://www.ringholm.com for additional information. |
Rene is the Tutor-in-chief of Ringholm. [e-mail] |